So, epilepsy in September 2017: which side won, negative or positive? It’s difficult to say. I guess if you know the general story of the top two articles, then you might see this as a lamer-than-average month.
But as always, people kept the positives moving. September included one annual event I appreciate – National Doodle Day – a time of the year when people offloading epilepsy can see clear-cut progress made as celebrities doodles are auctioned on eBay. When the three days of the auction are up, the high comes to a close, but it’s always good to know about the celebrities who have made the biggest difference towards dealing with epilepsy.
Research continues as well, and events to improve the lives of people with epilepsy have been organised.
Hip Hop, Wall, the Wayne
The first story to mention was pressed at the start of the month and will have grabbed more attention from the press than all the others that have followed. This time it’s about popular hip-hop artist Lil Wayne, who had his Las Vegas concert on September 3rd cancelled after he was found unconscious in his hotel room.
Although earlier in his career he was perhaps a little resistant to admit it, when the rapper was hospitalised back in March 2013 he later explained to DJ Felli Fel of Power 106 in an interview that he has epilepsy: “This isn’t my first, second, third, fourth, fifth, sixth or seventh seizure. I’ve had a bunch of seizures. Y’all just never hear about them. But this time it got real bad because I had three of them in a row.”
Real name Dwayne Michael Carter, Jr., I’d say Lil Wayne is at a similar level of severity with epilepsy to myself. Although the type of work we produce isn’t similar, we both look to hold down full time jobs and work hard with it, despite having plenty of seizures through the year. Sometimes it can get a bit dodgy and lead to hospitalisation – but if we keep ourselves as physically and mentally healthy as possible, we should be okay.
I hope millionaire celebrity Lil Wayne is in a good state of mind and wish him well with his epilepsy problems. With 31.4 million followers, he’s by far the popular person with epilepsy on Twitter.
I’m seeing more similarities between us – this guy’s got a few troubles with epilepsy, seems ambitious, and by being a Christian holds spiritual beliefs too. Oh, but he is an entrepreneur and owns a private jet.
Dwayne happens to be turning 35-years-old tomorrow, so who knows, I’ve got a good 6 and a half years to match up to his current status. Right now, I’m just going to keep on working as hard as I can.
Don’t Mess Around with Sodium Valproate
As I wondered what all the fuss was about, this article showed sodium valproate in its images and immediately came to my attention. In the UK, brand names include Epilim, Epilim Chrono, Episenta and Epival – and I take 500 mg of Epilim Chrono twice a day. However, I found males weren’t the ones at risk here; British females with epilepsy were the ones to take note if they want to keep themselves healthy and as safe as they should be during pregnancy.
After recent studies, nearly a fifth of women (18%) taking sodium valproate said they don’t know the risks it typically poses during pregnancy. If taking the AED, the risk of physical disabilities developing in your baby is estimated to be around 1 in 10 (10%). The risk of developmental problems, which can lead to learning difficulties, is around 2 in 5 (40%).
Another statistic that showed disappointing results was pointing a fault towards the NHS. Over a quarter of these women (28%) also said they’d never had a discussion about these issues with their healthcare professional.
Epilepsy charities have approached the government to change the way repeat prescriptions of sodium valproate are made for women and girls of a childbearing age. They’re asking for repeat prescriptions to no longer be renewed after 12 months, but instead, involve a face-to-face consultation with a doctor or nurse to discuss the medication.
Having this information repeated so often might sound a little silly, but catching up with a doctor when you have epilepsy can always give you the opportunity to talk about other issues that come up as well. It’s also an important fact that might have fallen from my mind if I’d been told it just once or twice, and memory loss isn’t too uncommon among others with epilepsy too.
National Doodle Day
National Doodle Day grabbed my attention for all the right reasons. Little graphics made by the people who occasionally maintain my interests were something I wanted to explore. Despite this, I quickly wondered whether the highest bids would be way too much for what I was willing to try and buy.
If you didn’t know, National Doodle Day is Epilepsy Action’s annual online auction of celebrity doodles. It began in 2004 to help raise awareness and funds for epilepsy. Over the years, over 1,600 celebrities have now contributed their doodles since it first started.
After around three hours of the three day auction Turner Prize winner Grayson Perry had his excellent doodle costing most with a bid made of £255. Paddington Bear Illustrator R.W. Alley had his character earning the charity a healthy £51 with five bids already to its name. However, there were still another two days 22 hours to go; I was hoping to see the prices rise high.
I couldn’t help but get involved for a short period and decided to make one of the first bids – I put down just £10 to get illustrator Chloe Douglass underway at about 8.45 pm. It didn’t stick long though, and I’m not somebody who should be bidding high at the moment. With a suave personal style and value, all the others I felt a little attached to in the auction were much too expensive for me.
At the end of it all, Grayson Perry had earned the most by selling his doodle for over £2200. It’s hard to remember every detail, but I believe R.W. Alley sold his drawing for over £500, Sir Peter Blake for over £250, and would say 20+ other celebrities had earned the charity more than £100 with their doodle’s too. All in all, it contributed to another smart and successful time of the year for Epilepsy Action.
Another Strong Need for a Professional’s Weed
I don’t think it’s too difficult to understand why hundreds of daily seizures could lead to a south-bound journey of about 250 miles. However, this trip wasn’t inside the UK and took 5-year-old epileptic boy Alfie Dingley across the North Sea.
So, can you guess why? Well, it wasn’t surprising to me really – cannabis oil treatment has been a mainstream area of success stories recently. But one disappointing fact about the medicine in Britain is that it’s still not legal to use in the UK. If Alfie’s mother were to give her son medical cannabis, she could have been jailed for up to 14 years.
Alfie has a rare form of epilepsy and tends to have hundreds of seizures every day. With very little useful treatment available he’s losing out on his education and social life. His mother Hannah also had to scrap her job in the travel industry to become his full-time carer.
So, after researching cannabis oil treatment in depth, their short trip into European territory will have began earlier this month. Nevertheless, cash can still be useful and they’re still willing to accept donations to help fund their move. They’ll now be living in the dutch city of Den Haag with their son and three-year-old daughter Annie, with a keen hope that the potential seizure-stopping medicine will prove effective.
Another Woman’s Wonderous Walk
Last month freelance writer Francesca Turauskis returned to the UK after a 500 mile trek across Spain to fundraise for Epilepsy Research and Epilepsy Action. We’re moving much further from Europe this time though, with a 1600 km trek up for view inside Australia now due for Sherri Beck.
Sherri is the mother of 15-year-old Emily Gale and wants to overcome the government’s lack of funding for epilepsy by attempting to raise $20,000 for epilepsy-related causes. The movement began on Saturday, 23rd September, and all the proceeds will go towards the Epilepsy Centre SA.
If Sherri’s somebody you’re willing to sponsor, then click here to visit her fundraising page.
As Mentioned, The Research Continued
What’s been found out through research hasn’t been incredible, but what I’ve noticed this month shows further progress made on both sides of the Atlantic.
The news was spread first from the West Midlands. Aston University and Birmingham Children’s Hospital worked together to try and improve the lives of children with difficult to treat forms of epilepsy. The University’s paediatric human tissue laboratory is the only one available in the UK and finds much use in taking human tissue from young people when they undergo surgery. This sort of research should help to investigate why seizures occur, why brain cells don’t respond to drugs and whether they might respond to new drugs currently being tested.
Next, we’re moving west towards Texas to take a look at recently discovered findings now in the Journal of Physiology. It all relates to childhood absence epilepsy (CAE), and an experimental study showing that brain activity is disturbed between seizures, not just during them, and this brain activity can continue despite therapy.
If the research done explains why abnormalities between seizures are linked to attention (and other cognitive) problems in humans, then studying EEG activity between seizures could be a helpful way of diagnosing and monitoring cognitive problems in CAE. Further study should show whether it is possible to manage CAE at the same time as a child’s seizures.
And finally, everybody with epilepsy can sit back down and relax. Other epilepsy-related research showed results that won’t be beneficial to people with epilepsy but could be to people with another disability. Skeletal dysplasia is commonly referred to as dwarfism and currently has not treatment available.
However, it has been discovered that the common epilepsy drug carbamazepine has been shown in lab tests to significantly improve bone growth impaired by a form of dwarfism. The team who have made this breakthrough finding are from universities in Newcastle, Manchester and Australia, with their results now published in The Journal of Clinical Investigation.
So there were two downers this month: one for Lil Wayne and his millions of fans; the other for any woman with epilepsy who’s interested in adding a child to her family.
One final fact not to forget though is that negatives never disappear. We hear about bad things happening all the time – the newspapers strive to tell us so much of it. But if you approach it all properly, it does lead to learning from the mistakes and improving things as quickly as possible.
I hope you enjoyed this month’s round-up.